Day +169: Run, Robin, run!

* Raise riches for resources with rock star Robin *

A special relationship

My poor cousin Robin, who only ever really wanted to be a rock star, has gone and got himself signed up to run around Wembley Park on Sunday – and all for a very good cause. Inspired by my plight, progress and persistence, he will be taking part in ‘Run to the Beat‘ for Leukaemia & Lymphoma Research. There are DJs along the course, providing music to distract participants from the pain they’re enduring, though it’s unconfirmed whether they’ll play anything by Robin’s band, Final Form.

I urge you to give generously for a great many reasons, but not least the following:

Leukaemia & Lymphoma Research
I think I’ve mentioned before the huge importance of their contribution to medical progress, and specifically to improving – and discovering new – treatments for blood cancer patients such as me. In the time between my initial diagnosis in 2005 and my relapse last October, huge steps have been made, and it’s only by funding more of the same that prognoses and survival rates will continue to improve. That’s where we can all come in, by supporting them. Apart from being involved in keeping me alive this far, they also showed their unlimited capacity for patient support, by sending me an umbrella when they saw I was relying on a wok to keep off the rain. Please give to them.

Barfly today; Wembley tomorrow

Robin
This is the first charity fundraising he’s done since he was 12, and he says that’s because he’s doing something that is close to his heart. I reckon that if we pull together enough sponsorship, though, he’ll be so inspired that he will continue to do good deeds, which can only be of benefit to the world, and over the course of his lifetime raise vast, vital funds to go towards banishing blood cancer and the like.  We’re looking at the future, people – not just the now. Also, when he’s a famous rock star, he might just go back to the list of people who donated and give them free backstage passes for his record-breaking sell-out stadium tour. Oh, and he says he should have done more training…

Blood Cancer Awareness Month
September has been designated a particular time to be thinking about and supporting people with blood cancer, charities that improve their prospects and ways to increase awareness. Have you done anything yet to support the cause? If this month isn’t an ideal time to contribute to the anti-blood cancer cause, then when is?

Robin: “What have I let myself in for?”

Me
I was very moved to read Robin’s words that he’s doing this “to raise money to beat leukaemia because it won’t leave you alone: but more than that, you’ve beaten it twice and are a true inspiration”. I’ve been lucky to have the benefit of amazing support and astonishing progress in the field of leukaemia research; please help ensure that is the case for EVERYONE with blood cancer. Oh, and Robin linked to my blog, calling it “incredible”, so please thank him on my behalf with a few (or, even better, many) pounds…

What are you waiting for?

Go and sponsor him!

Days +64 to +68: My very own triathlon effort

I’ve been feeling a bit more tired over the past few days; perhaps because of the triathlon in which I competed on Thursday evening…

 

This was all one take (as you can probably imagine), but hopefully explains the importance of Leukaemia & Lymphoma Research, and why you MUST support Anna in the Blenheim Palace triathlon on Sunday. Not only is she running, swimming and cycling for a fantastic cause, but her version of the triathlon will be vastly more difficult than mine!

Please visit her fundraising page and give generously; otherwise I’ll sneak into your house in the middle of the night and steal your socks. Maybe.

 

You may be glad to hear that since my triathlon, I’ve shaved… In other good news, my hospital visits have been reduced from two a week to one a week. I think the twice-weekly visits were a necessity to assess the ciclosporin level and keep it at the right dose, but now I’m reducing the dose anyway, there’s no benefit in measuring the level.

We’re also more than two-thirds of the way through the first three months / 100 days; if that’s not a reason to give generously to Anna’s triathlon effort on Sunday, I don’t know what is!

Since I shaved, Mariacristina’s no longer embarrassed to go out in public with me

Days +56 to +59: Feel free to graffiti our house

“She must be crazy. Great!”

I’m pretty certain that before my leukaemia relapse, if Mariacristina had used a paint sampler – intended to check colour suitability – to vandalise the walls of our downstairs loo, albeit with friendly graffiti, I’d have shaken my head, sighed and looked reprovingly at her while saying ‘Cuoooore…”. After all, the chances were that the graffiti would be there for at least some time before we got the loo properly painted, and having a darker colour splashed all over the walls may well have added to the work, if we chose a lighter colour in the end.

It’s difficult to get even slightly upset about such things these days, though; the sheer fun, humour and love that Mariacristina’s graffiti showed was definitely something to be celebrated – and so what if it meant we’d have a crazy-looking loo for a bit (surely that’s a good thing?), and might have to put in a bit more work later? Looking back, I can remember so many times when my automatic reaction to any of Mariacristina’s slightly more off-the-wall suggestions or actions would be to set myself in opposition, perhaps because I thought her silliness needed a counterbalance of common sense.

What a load of rubbish! We make hundreds, or thousands, of decisions every day, the vast majority of which simply need a resolution one way or the other, without agonising over the consequences of a ‘wrong’ choice that would probably be just as ‘right’ as its alternative. I’m naturally cautious, probably because I never want to embarrass myself or anybody else, but being seriously ill (again) has taught me that unless something is likely to damage someone or make life significantly more damage, it’s unlikely to be worth worrying about.

Bacon matters (philosophically)

I’ve been thrilled that the video of my Donor Song has been shared and viewed by lots of people – hopefully it’s encouraged at least a few to sign up to a bone marrow register such as Anthony Nolan or Delete Blood Cancer. Had it been up to me, however, I’d probably still be re-recording it, adding other bits to the video and tweaking it within an inch of its life. Mariacristina, though, told me not to bother – it didn’t matter that I tripped over the chords and the lyrics a few times, as the heart and intention of the song was by far the most important thing. I’m pretty certain she was right – I doubt many people were particularly interested in my struggles with getting my fingers around the Fm chord, or were cursing at the lack of something to look at beyond my bald head and overactive eyebrows.

When it comes to things that do matter, I was very sad to hear of 19-year-old mega-fundraiser and bowel cancer patient Stephen Sutton’s death last week. Through his ‘Stephen’s Story‘ blog, he managed to raise awareness, as well as more than £3 million for the Teenage Cancer Trust. He knew for a while his cancer was terminal, but that doesn’t make his passing any less sad. I’ve always loved John Donne’s words:

Any man’s death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee.

Stephen famously had a bucket list of things he wanted to do before he died, and I believe it was this that initially caught the attention of the public. How could you not be moved and inspired by a teenager’s efforts to pack as many experiences as possible into a hugely shortened life? The very fact a time-critical bucket list was a consideration at his age was heartbreaking.

Interestingly, however, as support for his fundraising and awareness-raising efforts grew, the bucket list faded into the background. I’m sure the bucket list had been an important focus to avoid living out his last months faced just with treatment and the bleak prospect of dying, but later that focus shifted to the incredible charity efforts he was inspiring. When people got in touch with him in his final months with offers to help him tick off experiences on his list, he explained that that was no longer a priority.

It seems he’d decided that what was really important to him was the benefit he could bring to other teenagers facing cancer, as well as, naturally, spending precious time with friends and family. Perhaps it was this utter selfnessness in abandoning some of his own personal dreams to focus on his ambition to help others that rightly made him a hero in so many eyes. He managed to squeeze as much good for as many people as possible out of a terrible situation, always with a positive attitude and a smile, and for that he deserves all the praise he has been given, and more.

Family and friends matter, as my uncle James would agree

My efforts are on a far smaller scale, but I hope I get my priorities right. My energy levels are still up and down, but every time I have to react, make a decision or choose a path, I try to think about what really matters. As far as I’m concerned, Mariacristina could graffiti her love on all our walls, and I’d be delighted.

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In other news, it’s very nearly Day +60, which would normally call for another chimerism test. It will also be the two-month milestone – hurrah! – and takes me closer to the magical figure of Day +100 and out of the most vulnerable post-transplant period. My ciclosporin levels keep showing up as high, so my dose keeps reducing, but we’ve now reached the point where the doctors are keen to start weaning me off it completely, which would give my immune system a proper chance to develop to the full. It’s exciting, and amazing to think we’re at that point already. Otherwise, bloods are okay, though the flu symptoms are still lingering – probably because I’ve still not got anywhere near a full complement of lymphocytes.

Things are still looking positive, though, and that’s what matters most right now.

Eyebrow fashion matters, of course

First trip to the (outside of a) pub for a long time!

Days +40 to +42: Double triple family fundraising heroes

Go Anna!

Although I’m managing to stretch my legs across Streatham Common and even spend a gentle few minutes on the exercise bike these days, nothing compares to the magnificent efforts Anna Walker and Will Allen will be putting in, alongside others, at the Blenheim Palace triathlon to raise money for Leukaemia & Lymphoma Research in early June.

The Walker and Norton families are hopelessly intertwined, for so many reasons including the fact that Legh is my godfather, he and Di were my guardians when my parents were in Naples, my father lived with them on and off for quite a while not all that long ago, Andrew was best man at my wedding to Mariacristina, Anna was at university with Freddie – just for starters… I could go on, but suffice to say we are family.

In Anna’s own words:

On Sunday 8th June I will be taking part in the Blenheim Triathlon to raise money for Leukaemia & Lymphoma Research and to promote the work of the charity Anthony Nolan in finding bone marrow donors. Having discovered I am unable to donate bone marrow myself I am instead swimming 750m through a lovely cold lake, cycling 19km and then running 5km…and I really don’t like running (unless with a hockey stick!).

As you may recall, I’m a big fan of both those charities, so would urge you to support Anna’s efforts in any way you can, and spread the word and the link.

Support Anna’s triathlon fundraising effort

 

Scarlett and her Dragons

It turns out that my cousin Will Allen is also taking part in the triathlon, as part of a group of parents from his children’s school supporting nine-year-old Scarlett, who was first diagnosed with acute lymphoblastic leukaemia at the age of six and is now undergoing treatment after relapsing just six months after getting through it all the first time. You can read more about her on the team’s fundraising page, but I thought I should share Will’s broader reasons to be raising money for Leukaemia and Lymphoma Research.

In Will’s words:

When I was younger, I used to read or hear about health statistics, typically around cancer, where the grim message was that the disease will affect, directly or indirectly, one-in-four during one’s lifetime or something ghastly like that.  My youthful sense of invincibility used to dismiss that message.  Well sadly, as I am sure we all know, the older we get the more accurate that message I used to ignore seems to be.  Indeed a very close friend has recently recovered thanks to an early diagnosis of the disease, as has my best friend’s sister who is also thankfully in remission.  There is my young cousin, George, who is currently recovering from a stem cell treatment following the return of acute lymphoblastic leukaemia and there is Scarlett.

Sponsor Will and ‘Scarlett’s Dragons’ on their fundraising page

Thank you – it’s a great cause. It is amazing to have already seen the progress in blood cancer treatment between my first diagnosis and my relapse: on a personal note, it was the innovative MARALL trial that helped me into complete remission this time around. And even 10 years ago the type of reduced-intensity transplant I went through wouldn’t have been a possibility either.

Hurrah for Anna and Will and all those raising money for such a fabulous cause: they’re heroes.

Day +12: Charity case

#noivciclosporinselfie

I reluctantly decided not to go ahead with launching a #selfiewithmyplatelets campaign, partly because I’m not sure anyone in the country has any money left after donating generously to various cancer charities as a result of the #nomakeupselfie campaign on Facebook. I expect you’ll have heard of it even if you’ve avoided the social network, but the short of it is that it inspired (or reminded) a lot of people to donate to cancer charities – I think Cancer Research alone received £8 million as a result.

I believe it started out as an effort to raise awareness for breast cancer, but some bright spark realised it would be even more worthwhile to add the fundraising aspect, too, and the breadth of its scope expanded to take in charities covering a far wider range of charities. I’m particularly glad about this, not just because my own cancer wasn’t in my breasts, but also because a lot of other cancers with worse survival rates already suffer from less awareness and research funds. The fact a catch-all charity such as Cancer Research benefited hugely is great.

When I posted about the importance of bone marrow donors, I was moved and thrilled that so many people signed up for registries as a result. I’m also overwhelmed by the amount of support we have, and can’t help but feel I should make the most of having so many people’s attention to bring some benefit to the charities I feel have been and will continue to be most important in our fight.

Once I’m in better shape, I’m keen to organise some sort of event or undertake something challenging to raise funds for these charities, in order to give something back. But if my situation has inspired you to make a donation already, these are the charities I would ask you to seriously consider…

The Full Circle Fund
I’ve talked about this before, since when I have enjoyed the relaxation and feelings of wellbeing provided by reflexology and massages. The charity was launched by Suzie, who was working on the Ruth Myles Unit during my first round of fighting leukaemia – at the time we talked a lot about the importance of looking beyond the clinical issues to address the quality of life of patients undergoing treatment for cancer. It’s a small charity, but has grown a lot since then, and I feel a strong personal link. Any extra funds will help them provide wonderful complementary therapies to more patients.

Anthony Nolan
I’ve been extremely lucky to have a fabulous donor (10/10 match, same blood type, etc) for my stem cell transplant. In fact, Anthony Nolan found two other equally good matches, which is amazing. Many others are not so lucky, though, and there are still many people for whom a match cannot be found. Anthony Nolan puts its funds towards getting more people on their register, which enables more patients to undergo life-saving transplants. They recently linked to my blog from their Patients and Family Facebook page, too – hopefully it might help others facing a transplant.

Leukaemia & Lymphoma Research
You may have seen fundraisers running marathons and the suchlike dressed as bananas, which in itself is a great commendation. When Harriet wanted to raise money for a relevant charity the first time I was ill, I suggested LLR on the basis that their research was the most likely to directly help me fight the leukaemia. This time around, having relapsed, I was very grateful for the progress made in leukaemia treatment since then, when the innovative MARALL trial using antibodies got me into remission. As researchers find new treatments and improve current approaches, survival rates will increase.

I would thoroughly approve of contributions to any of these causes!

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Ciclosporin: as welcome as jelly beans

Meanwhile, on Day +12 my ciclosporin dose has now shifted from IV to tablet form – apart from reducing the time I’m attached to a drip, it also means the doctors can check the levels (on Monday, Wednesday, Friday) through my line, rather than having to jab me in the arm. Unfortunately my veins are not what they used to be, so it’s a relief that my arm will no longer resemble a dart board…

Neutrophils are at 1.7, having fallen as expected after I stopped the G-CSF. They may continue to fall, but if they go under 1.0 they’ll give me more G-CSF. I’ll also get a first idea of the chimerism (% donor cells vs my original cells) in a couple of days’ time.

All in all, doctors are pleased, as am I. My energy levels are better than I was expecting, and were it not for the defibrotide I’d probably be going home in the next few days. Even so, I hopefully won’t have long to wait!